Thalassemia Healthcare Provider Resource Toolkit

What to know

  • Thalassemia is a complex group of inherited blood disorders commonly found in people of Italian, Greek, Middle Eastern, Southern Asian, and African descent
  • Severe forms of thalassemia usually are diagnosed in early childhood and are lifelong conditions
  • Healthcare providers caring for people with thalassemia may find the information in this toolkit useful
Female healthcare provider looking at laptop

Continuing Medical Education offerings and webinars

Virtual Thalassemia Grand Rounds

ob体育 and the (CAF) offer ongoing education, with free continuing education credits (CME, CNE, and CEUs), through the Virtual Thalassemia Grand Rounds. These rounds provide evidence-based training for healthcare providers and meet ob体育's Quality Training Standards. The rounds provide key clinical updates on various topics of thalassemia treatment, care, and management. View past presentations in the archives.

Webinars on thalassemia

Visit the archives to view a variety of ob体育-funded webinars on thalassemia.

All Grown Up—Ensuring Effective Care Transitions in Beta-thalassemia

These rounds are offered by the American Society of Hematology, in collaboration with the France Foundation. Learn more

Thalassemia Essentials

Learn more about thalassemia in this led by Sujit Sheth, MD, director of the in New York City.

ob体育 activities related to transfusion complications in thalassemia

Learn more about ob体育's work to provide information about the complications that can occur after people with thalassemia receive blood transfusions.

Resources on newborn screening

  • Learn more about carrier screening for genetic conditions in this published by the American College of Obstetricians and Gynecologists.

Publications

Hemoglobinopathies: Current Practices for Screening, Confirmation and Follow-up
This publication developed by the Association of Public Health Laboratories through ob体育 funding, is used worldwide as a resource in hemoglobinopathies screening

. JAMA Health Forum. 2025 Mar 7;6(3):e250064. Quarmyne MO, Bock F, Lakshmanan S, Attell BK, Snyder A, Boudreaux J, Sheth S, Bender MA, Lal A.

Int J Neonatal Screen. 2021;7(4):83. Bender MA, Hulihan M, Dorley MC, Aguinaga MDP, Ojodu J, Yusuf C.

Newborn Screening Practices and Alpha Thalassemia Detection — United States, 2016. MMWR Morb Mortal Wkly Rep 2020;69:1269–1272. Bender MA, Yusuf C, Davis T, Dorley MC, Del Pilar Aguinaga M, Ingram A, Chan MS, Ubaike JC, Hassell K, Ojodu J, Hulihan M.

Learn about carrier screening

When two trait carriers have a child, there is a that the baby will have a serious blood disorder. Carrier screening is a term used for genetic testing performed to learn whether a person has a gene mutation associated with a particular condition. Women who are pregnant or thinking about getting pregnant should be offered carrier screening.

Thalassemia treatment centers

Below are the locations and contact information for each of the thalassemia treatment centers.

Additional Resources

Resources for thalassemia care, treatment, and management

View resources on best practices for the management of people with thalassemia. Reports on care practices have been developed by (1) UCSF Benioff Children's Hospital, Northern California Comprehensive Thalassemia Center, a large thalassemia center of excellence in the United States, and (2) the Thalassemia International Federation (TIF). TIF is an umbrella organization with 232 member associations in 62 countries and is focused on thalassemia care worldwide.*

  • View UCSF Benioff's
  • View TIF 2017
  • View TIF 2021

Clinical thalassemia management checklists

These evidence-based checklists were developed as expert consensus documents and reviewed by the scientific medical advisory board of the (CAF). This work was funded by the *

Thalassemia transfusion resources

View a collection of thalassemia transfusion resources developed for healthcare providers, blood banks, and persons with thalassemia and their families.

The materials have been developed as a supplemental (user-friendly) resource for healthcare providers, blood banks, and persons with thalassemia and their families to provide key information from a recent evidence-based that details recommendations for the transfusion management of beta (β) thalassemia in the United States.**

Female healthcare provider high fives young boy sitting on father's lap in doctor's office.
What to Transfuse: Specifications for Red Cell Products
Key considerations for providers when selecting red cell products for people with β thalassemia.
Doctors looking over a medical chart
Initiating Regular Transfusions
Key considerations for providers initiating regular transfusions for people with β thalassemia.
Diverse group of doctors talking
Developing a Transfusion Plan
Key considerations for providers when developing a transfusion plan for people with β thalassemia.
Group of healthcare providers looking at medical chart
Initiating Regular Transfusions
Information to help people with β thalassemia know when and why to initiate regular transfusions.
Doctors talking to patients giving blood
Understanding a Transfusion Plan
Information to help people with β thalassemia understand their transfusion plan.

Other clinical management resources*

Learn more about growth issues in thalassemia, presented by Tariq Ahmad, MD, FAAP, UCSF Benioff Children's Hospital Oakland.

View this resource to learn more about best practices for the successful transition of care from adolescence to adulthood, presented by Farzana Sayani, MD, MSc, University of Pennsylvania.

View this resource to learn more about clinical management issues in fertility and pregnancy in thalassemia, presented by Farzana Sayani, MD, MSc, University of Pennsylvania.

Other links of interest

Video Series on Living with Thalassemia

Aaron Cheng talking in a library
Learn about one physician's journey growing up with and managing thalassemia.

Learn more about thalassemia by visiting . Their mission is to advance the treatment and cure for thalassemia; enhancing the quality of life of patients; and educating the medical profession, trait carriers, and the public about thalassemia.

Learn about a form of alpha thalassemia.

View a for thalassemia. ClinicalTrials.gov is a database of privately and publicly funded clinical trials and is provided by the U.S. National Library of Medicine.

Footnotes

* While links to these resource materials are included here as a resource for healthcare providers, they are not part of ob体育 guidelines and recommendations. The reports were developed independent of ob体育, and the contents are solely the responsibility of the authors and do not necessarily represent the official views of, nor an endorsement by, ob体育 or the Department of Health and Human Services.

** The thalassemia transfusion resources are not part of ob体育 guidelines and recommendations. The original evidence-based report and recommendations were developed in 2021 by a multi-disciplinary committee, the Thalassemia Western Consortium. Their work on clinical recommendations for transfusion practices was independent of ob体育, and the contents of the resulting published report and these thalassemia transfusion resources are solely the responsibility of the authors and do not necessarily represent the official views of, nor an endorsement by, ob体育 or the Department of Health and Human Services.

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Content Source:
National Center on Birth Defects and Developmental Disabilities (NCBDDD)